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Living with a urostomy

After some operations to remove the bladder you have a small hole like a spout called a stoma (urostomy) on your abdomen. The urine comes out through the stoma. It may take some time to get used to this but you will have a stoma nurse to help you. There are practical things to learn such as changing your urostomy bags or self catheterising and irrigating your stoma. But there is also the change in your body to come to terms with. If you find this difficult, you could contact one of the bladder cancer organisations.

Job, sports and social life

Unless you do heavy manual work, your surgery should not make any difference to your job. Ask your stoma nurse if you are unsure. Your urostomy will not stop you enjoying your favourite pastimes. Exercise and swimming are possible. Your stoma nurse can give you advice. To avoid having to get up in the night to empty your stoma bag, don't drink large amounts of fluids late in the evening. You can also attach a night drainage bag to your day one so it can hold more urine.

Your relationships

It is very likely that you will feel worried about how the stoma will affect your relationships. These can be practical worries about the bag being noticed or leaking. Or you may have emotional worries about how your friends or partner will react. If you are able to talk openly with close friends and family about your surgery, you will probably find that these worries may lessen or disappear.

Living with bladder reconstruction

There are really very few things you can’t do. If you lift something really heavy, you may find that your bladder leaks. You will find out by trial and error which activities cause problems.

Early bladder cancer

If you have had a cystoscopy to remove early bladder cancer, then you should not notice any physical problems at all. You may worry that the cancer may come back and you may need further treatment. Knowing that you are going to have cystoscopies every few months may also worry you. But if everything goes well, the check ups will gradually become less frequent.

Living with a urostomy

After operations to remove your bladder you may have a small hole like a spout called a stoma (urostomy) on your abdomen. The urine comes out through the stoma. It may take some time to get used to this but you will have a stoma nurse to help you. There are practical things to learn, such as how to put a bag over the stoma to catch the urine.

If you had an operation that made a pouch inside the stoma to contain the urine you will need to learn how to put a catheter into the stoma to drain it.

Your relationships

Whether with a partner, or with friends, it is very likely that you will worry about how the stoma will affect your relationships. These can be practical worries about the bag being noticeable or leaking. Or you may have emotional worries about how your friends or partner may react.

Stoma appliances are very well designed. They are not easily seen through your clothes and should not leak. If you have problems with your bag, talk to your nurse. A different type of bag may suit you better.

If you had surgery that created a pouch in the abdomen to contain the urine (a continent urinary diversion) it should not leak unless you let it get too full. If you are having this problem, it may help to empty the pouch more often. You may also need to reduce the amount you drink after a certain time in the evening.

If you are able to talk openly to friends and family about your surgery, you will probably find that your fears will disappear. Most people are very willing to try and understand and help if they can.

Your sex life

Sports and social life

Your stoma shouldn't stop you enjoying your favourite pastimes. You can exercise and swim. If you have a urostomy, you can wear a smaller bag while you swim if you prefer. And if you have an internal pouch, empty it before you start. You can wear a waterproof dressing for swimming if you want to. Your stoma nurse can advise you about this.

There is no reason why you shouldn't drink alcohol with a urostomy. But bear in mind that the more liquid you drink, the more urine you will pass. So you may have to get up in the night to empty your bag or pouch. To help you get a good night's sleep it can help to avoid drinking large amounts of any liquid later on in the evening. You can also attach a night drainage bag to your day bag so that it can hold more urine.

Living with bladder reconstruction

The advantage of having a new bladder made is that your outside appearance will not change. You should be able to do all the things that you could do before the surgery. You will need to learn to pass urine by increasing your tummy (abdominal) pressure and this may take a few weeks or months.

If you are lifting something really heavy, you may find that your new bladder leaks. You will find out by trial and error whether any activities cause problems with leaking. If your bladder is leaking slightly when you are not doing anything really strenuous, try emptying it more often.

Pelvic floor exercises can help to stop bladder leaking. And you can arrange an appointment to talk to your surgeon or specialist nurse. They can help you find ways to stop the leaking. You can find out how to do pelvic floor exercises on the NHS Choices website.

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